Age-Friendly Research: A Pilot Exploration of Tools to Facilitate Inclusion of Older Adults in Research.

Older adults have a high burden of chronic diseases but are underrepresented in research. Researchers with geriatric or gerontology expertise have developed frameworks to recruit and retain older adults but these have not been widely adopted by the broader research community. We developed or adapted seven Age-Friendly research tools and invited research team members with no aging training to pilot test them. We consented 21 research team members and asked them to share strengths, limitations, and areas for improvement for each tool for up to 4 months via REDCap surveys. Sixteen participants (76%) completed at least one survey. The communication guide and Age-Friendly research checklist were the most utilized tools among participants. Key barriers to implementation were lack of time and lack of age-appropriate populations. Facilitators of tool implementation were accessibility and ease of use, webinar training, and supportive teams. Participants found the tools valuable to encourage Age-Friendly research studies. Adoption of Age-Friendly research tools could improve the experience for research team members and older adults alike.

Age-Friendly Research: promoting inclusion of older adults in clinical and translational research.

Introduction: Older adults have a high disease burden but are often underrepresented in research studies due to recruitment and retention obstacles, among others. Geriatric research specialists have identified solutions to these challenges and designed frameworks to help other researchers. Our team utilized three frameworks to create an interactive webinar series aimed to educate research team members on Age-Friendly practices. Methods: We recruited 40 non-aging-trained research team members to participate in a six-session, real-time webinar series from October to November 2022. Sessions were comprised of 20-30 minute didactics and 30-40 minute group discussions. Participants completed pre- and post-program surveys, commitment to change forms, and post-webinar session surveys. Responses were examined for strengths and areas for improvement. Wilcoxon signed-rank tests assessed differences in confidence scores. Results: Self-reported confidence scores improved after the webinar series. Most participants provided positive feedback and high likeliness to use what they learned and recommend the webinar to others. The strengths were practical tips, applicable tools, and real-world examples. The major area for improvement was information on industry-sponsored trials. The commitment to change responses varied from pledging to use more inclusive language to adapting materials to improve the consent process. Conclusion: This interactive Age-Friendly Research webinar series was feasible and well received by participants. We created an Age-Friendly Research community fostering commitment to change clinical and translational research to be more inclusive of older adults. Future work will include more information on industry-sponsored trials and expand to other research centers.

'There's no straight line ' a consumer-informed intervention for FTD family care partners: the STELLA-FTD pilot study.

OBJECTIVES: Behavioral symptoms and communication challenges are particularly apparent in frontotemporal degenerative (FTD) dementias. There is a paucity of psychoeducation programming specifically tailored to the needs of families with FTD. We revised an existing intervention to meet the needs of these families. METHODS: We used a quasi-experimental approach. In Phase 1, we sought consumer input about an existing intervention. In Phase 2, we modified the intervention based on the qualitative findings from Phase 1 and tested the revised intervention (STELLA-FTD) for feasibility, acceptability and early-stage efficacy. Outcome for Phase 2 included feasibility data and care partner reactivity to upsetting behaviors. Secondary outcomes included data from unobtrusive sleep monitoring. An inductive analysis of transcripts from the Phase 2 STELLA-FTD focus group provides guidance for future revisions. RESULTS: Fifteen family care partners participated in the Phase 1 focus groups; sixteen care partners enrolled in Phase 2. Testing in Phase 2 revealed that the care partners found our consumer-informed revised intervention both feasible and acceptable. The post-intervention findings suggest STELLA-FTD has the potential to reduce care partner reactivity to upsetting behaviors and to decrease care partner burden. Sleep did not change over the 8-week intervention. CONCLUSIONS: The revised STELLA-FTD intervention was found to be feasible and acceptable, and has potential to improve care partner burden for families living with FTD. Providing the intervention via telehealth maximized access and engaged rehabilitation specialists in providing disease management content. Future revisions will include examination of efficacy and mechanism of action (OHSU IRB # 00022721, ClinicalTrials.gov NCT05338710).

Global rural health disparities in Alzheimer's disease and related dementias: State of the science.

INTRODUCTION: Individuals living in rural communities are at heightened risk for Alzheimer's disease and related dementias (ADRD), which parallels other persistent place-based health disparities. Identifying multiple potentially modifiable risk factors specific to rural areas that contribute to ADRD is an essential first step in understanding the complex interplay between various barriers and facilitators. METHODS: An interdisciplinary, international group of ADRD researchers convened to address the overarching question of: "What can be done to begin minimizing the rural health disparities that contribute uniquely to ADRD?" In this state of the science appraisal, we explore what is known about the biological, behavioral, sociocultural, and environmental influences on ADRD disparities in rural settings. RESULTS: A range of individual, interpersonal, and community factors were identified, including strengths of rural residents in facilitating healthy aging lifestyle interventions. DISCUSSION: A location dynamics model and ADRD-focused future directions are offered for guiding rural practitioners, researchers, and policymakers in mitigating rural disparities. HIGHLIGHTS: Rural residents face heightened Alzheimer's disease and related dementia (ADRD) risks and burdens due to health disparities. Defining the unique rural barriers and facilitators to cognitive health yields insight. The strengths and resilience of rural residents can mitigate ADRD-related challenges. A novel "location dynamics" model guides assessment of rural-specific ADRD issues.

Ability and Willingness to Participate in Dementia Clinical Research: A Qualitative Study.

BACKGROUND AND OBJECTIVE: Dementia clinical research studies have difficulty recruiting and enrolling participants and their study partners. Through convening and working with a community advisory board and the incorporation of the perspectives of people living with dementia and caregivers, this study utilized a community-engaged approach to identify factors affecting dementia clinical research participation. METHODS: In this qualitative study, 24 participants (12 people living with dementia and 12 caregivers), half of whom participated in dementia clinical research, were interviewed. Deductive and inductive approaches to thematic analysis were conducted to identify themes. RESULTS: Ten themes were organized into two categories. Factors affecting ability to participate include symptom recognition and diagnosis, knowledge of opportunities, ineligibility/disenrollment, time/distance, caregiver burden, and online searches for study opportunities. Factors affecting willingness to participate include helping others, living life to the fullest, caregiver support, and taking study drugs. CONCLUSIONS: When combined with a reframing of factors affecting dementia clinical research enrollment within the context of ability and willingness to participate, these findings may be useful for elucidating factors and developing strategies to enhance participation in clinical research and advance efforts dedicated to finding effective treatments for dementia.

Caregiving in Older Adults; Experiences and Attitudes toward Smart Technologies.

(1) Background: The development of assistive technologies has become a key solution to reduce caregiver burden. The objective of this study was to survey caregivers on perceptions and beliefs about the future of modern technology in caregiving. (2) Methods: Demographics and clinical caregiver characteristics were collected via an online survey along with the perceptions and willingness to adopt technologies to support caregiving. Comparisons were made between those who considered themselves caregivers and those who never did. (3) Results: 398 responses (mean age 65) were analyzed. Health and caregiving status of the respondents (e.g., schedule of care) and of the care recipient were described. The perceptions and willingness to use technologies were generally positive without significant differences between those who ever considered themselves as caregivers and those who never did. The most valued features were the monitoring of falls (81%), medication use (78%), and changes in physical functioning (73%). For caregiving support, the greatest endorsements were reported for one-on-one options with similar scores for both online and in-person alternatives. Important concerns were expressed about privacy, obtrusiveness, and technological maturity. (4) Conclusions: Online surveys as a source of health information on caregiving may be an effective guide in developing care-assisting technologies receiving end users' feedback. Caregiver experience, whether positive or negative, was correlated to health habits such as alcohol use or sleep. This study provides insight on caregivers' needs and perceptions regarding caregiving according to their socio-demographic and health status.

Managing Complex Medication Regimens: Nurses can enhance a family caregiver's knowledge, skill, and confidence.

This article is part of a series, Supporting Family Caregivers: No Longer Home Alone, published in collaboration with the AARP Foundation. Results of focus groups conducted as part of the AARP Foundation's No Longer Home Alone video project supported evidence that family caregivers aren't being given the information they need to manage the complex care regimens of their family members. This series of articles and accompanying videos aims to help nurses provide caregivers with the tools they need to manage their family member's medications. Each article explains the principles nurses should consider and reinforce with caregivers and is accompanied by a video for the caregiver to watch. The first video can be accessed at http://links.lww.com/AJN/A74.

Administration of Subcutaneous Injections: Nurses can help family caregivers enhance their knowledge, experience, and skill in managing injectable treatments.

This article is part of a series, Supporting Family Caregivers: No Longer Home Alone, published in collaboration with the AARP Foundation. Results of focus groups conducted as part of the AARP Foundation's No Longer Home Alone video project supported evidence that family caregivers aren't being given the information they need to manage the complex care regimens of their family members. This series of articles and accompanying videos aims to help nurses provide caregivers with the tools they need to manage their family member's medications. Each article explains the principles nurses should consider and reinforce with caregivers and is accompanied by a video for the caregiver to watch. The second video can be accessed at http://links.lww.com/AJN/A75.

Dementia 360 ECHO: Using technology to facilitate diagnosis and treatment.

Dementia affects one in ten adults over age 65. Paradoxically, dementia (e.g., Alzheimer's disease and related dementias) is underdiagnosed, with approximately 50% of those with dementia lacking a formal diagnosis. This limits options for care, support and research engagement. To address this gap, we developed and implemented a telehealth-based ECHO (Extension for Community Healthcare Outcomes) program, "Dementia 360," to provide education and support for clinicians and allied team members. We assessed the feasibility and acceptability of this telementoring educational offering and the effect it had on clinician confidence in diagnosing and treating dementia. Clinicians from across Oregon (n = 67) attended learning sessions via videoconferencing technology. The sessions, which focused on dementia diagnosis and treatment, included didactic information provided by experts, followed by case discussions. We assessed clinician acceptability using surveys, and confidence in identifying and treating those with dementia prior to and after Dementia 360 using paired t tests. Dementia 360 was acceptable to clinicians and significantly increased their comfort levels in identifying and treating those with dementia. The technology-based program provided support and instruction that was acceptable by clinicians, even those in frontier areas of the state.

Relationship, Choice, Health, and Typologies of Unpaid Care Labor for Older Adults.

Providing unpaid care labor to older adult friends and relatives is associated with deleterious health outcomes, especially among persons who feel they have no choice when taking on care responsibilities. We used hierarchical cluster analysis and structural equation modeling of data from the National Alliance for Caregiving's Caregiving in the U.S. 2015 Survey to explore choice-outcome relationships. We identified three distinct care typologies, hands-on, household, and managerial care. Perceived lack of choice predicted emotional stress directly and indirectly through household and managerial care; predicted physical strain directly and indirectly through all care typologies; but only predicted negative health impact indirectly through mediation. Lack of choice had greater direct effects on emotional stress and negative health impact for adult-descendants compared to participants with other relationships with recipients, for whom the effects of lack of choice on outcomes were mediated through household and managerial care.

Results of a Randomized Trial Testing the Efficacy of Tele-Savvy, an Online Synchronous/Asynchronous Psychoeducation Program for Family Caregivers of Persons Living with Dementia.

BACKGROUND AND OBJECTIVES: Family caregivers will grow in number as dementia prevalence increases, underscoring the continued importance of equipping these individuals for their new roles and ameliorating the adverse effects of caregiving. RESEARCH DESIGN AND METHODS: A three-armed, waitlist, randomized trial design tested Tele-Savvy, an online adaptation of a successful in-person psychoeducation program, the Savvy Caregiver. Tele-Savvy is delivered over 43 days to groups of 6-8 caregivers in 7 weekly synchronous sessions accompanied by 36 brief asynchronous video lessons. We enrolled 23 cohorts of 15 eligible caregivers (N = 261), randomized 2:2:1 to active, attention control, and usual care arms. We assessed caregiver psychological well-being and caregiving mastery at baseline and 3, 6, 9, and 12 months. Multilevel linear models assessed outcomes over the 3 time points examined. The trial was slightly truncated, with Data and Safety Monitoring Board approval, because of the apparent confounding psychological effects of coronavirus disease 2019 restrictions. RESULTS: Study findings indicate statistically and clinically significant benefits to Tele-Savvy arm caregivers (with moderate to large effect sizes) in the areas of depression, perceived stress, reaction to care recipients' behaviors, and enhancement of caregiver mastery. Expected benefits for caregiver burden and anxiety were not found. DISCUSSION AND IMPLICATIONS: Findings attest to program efficacy and the viability of employing distance means to improve family caregivers' emotional well-being and sense of mastery in the caregiving role over a 6-month period. Next steps entail finding alternate ways to deliver the program to those with connectivity and/or time constraint problems.

The Tele-STELLA protocol: Telehealth-based support for families living with later-stage Alzheimer's disease.

AIMS: We aim to establish the feasibility and acceptability of the Tele-STELLA (Support via Telehealth: Living and Learning with Advancing Alzheimer's Disease and Related Dementias) intervention. We will also assess the efficacy of the intervention in reducing the frequency of behavioural symptoms of dementia as well as family Care Partner reactivity to the symptoms. DESIGN: This is a multi-component, quasi-experimental study that focuses on facilitating effective management of behavioural symptoms that occur in the later stages of dementia. METHODS: Family Care Partners (n = 124) for persons with Alzheimer's disease will participate in two 8-week videoconferencing components that address behavioural symptoms-in both the persons with Alzheimer's disease and their Care Partners. In the first component ('Nova'), Care Partners work with one nurse for an hour/week for 4 weeks, then they join a small group for another 4 weeks. In the second component ('Constellation'), Care Partners work in a larger group to hone skills and knit supportive relationships. Behavioural symptom frequency and Care Partner reactivity to the behaviours will be measured prior to, during and after the intervention. The study is funded by the United States National Institute on Aging (R01AG067546); funding was initiated as on February, 2021. DISCUSSION: Tele-STELLA fills a gap in current videoconference-based psychoeducational interventions in that it offers real-time interaction with nurses and peers. The intervention was designed with feedback by pilot participants. This study will assess Tele-STELLA in its current, novel format; thus, preparing it for a larger, future randomized controlled trial. IMPACT: Tele-STELLA addresses symptoms that occur in the later stages of dementia, providing families with tools to facilitate effective behavioural management. Because Tele-STELLA is implemented via videoconferencing, it targets Care Partners who face barriers to support, such as cost and transportation. TRIAL REGISTRATION: This trial is registered with ClinicalTrials.gov (#NCT04627662).

Including older rural adults in research: Practical guidance for addressing the NIH Inclusion Across the Lifespan policy.

INTRODUCTION: The NIH Inclusion Across the Lifespan policy has implications for increasing older adult (OA) participation in research. This study aimed to understand influential factors and facilitators to rural OA research participation. METHODS: Thirty-seven rural adults aged ≥66 years participated in focus groups in community centers in four Oregon "non-metro" counties. Transcribed discussions were coded using open-axial coding by an interdisciplinary analytical team. RESULTS: Ages were 66-96 (mean 82.2) years. Majority were women (64%) and white (86%). Primary, interrelated discussion themes were Motivation and Facilitators, Perceptions of Research, and Barriers to Research Participation. Participants were motivated to engage in research because they believed research had implications for improved longevity and quality of life and potentially benefited future generations. Motivational factors influencing participation included self-benefit and improving others' lives, opportunities to socialize and learn about current research, research transparency (funding, time commitment, and requirements), and financial compensation. Perceptions influencing trustworthiness in research included funding source (industry/non-industry) and familiarity with the research institution. Barriers to research participation included transportation and concern about privacy and confidentiality. Suggestions for making research participation easier included researchers coming to rural communities and meeting participants in places where OAs gather and providing transportation and hotel accommodations. CONCLUSION: Lessons learned offer practical guidance for research teams as they address the new NIH Inclusion Across the Lifespan policy. Including OAs in research in ways that motivate and facilitate participation will be critical for a robust representation across the lifespan and in tailoring treatments to the specific needs of this population.

Table Correction: Using Technology to Facilitate Fidelity Assessments: The Tele-STAR Caregiver Intervention.

[This corrects the article DOI: 10.2196/13599.].

Attitudes toward advance care planning among persons with dementia and their caregivers.

OBJECTIVES: To examine factors that influence decision-making, preferences, and plans related to advance care planning (ACP) and end-of-life care among persons with dementia and their caregivers, and examine how these may differ by race. DESIGN: Cross-sectional survey. SETTING: 13 geographically dispersed Alzheimer's Disease Centers across the United States. PARTICIPANTS: 431 racially diverse caregivers of persons with dementia. MEASUREMENTS: Survey on "Care Planning for Individuals with Dementia." RESULTS: The respondents were knowledgeable about dementia and hospice care, indicated the person with dementia would want comfort care at the end stage of illness, and reported high levels of both legal ACP (e.g., living will; 87%) and informal ACP discussions (79%) for the person with dementia. However, notable racial differences were present. Relative to white persons with dementia, African American persons with dementia were reported to have a lower preference for comfort care (81% vs. 58%) and lower rates of completion of legal ACP (89% vs. 73%). Racial differences in ACP and care preferences were also reflected in geographic differences. Additionally, African American study partners had a lower level of knowledge about dementia and reported a greater influence of religious/spiritual beliefs on the desired types of medical treatments. Notably, all respondents indicated that more information about the stages of dementia and end-of-life health care options would be helpful. CONCLUSIONS: Educational programs may be useful in reducing racial differences in attitudes towards ACP. These programs could focus on the clinical course of dementia and issues related to end-of-life care, including the importance of ACP.

Retention of Alzheimer Disease Research Participants.

INTRODUCTION: Participant retention is important to maintaining statistical power, minimizing bias, and preventing scientific error in Alzheimer disease and related dementias research. METHODS: We surveyed representative investigators from NIH-funded Alzheimer's Disease Research Centers (ADRC), querying their use of retention tactics across 12 strategies. We compared survey results to data from the National Alzheimer's Coordinating Center for each center. We used a generalized estimating equation with independent working covariance model and empirical standard errors to assess relationships between survey results and rates of retention, controlling for participant characteristics. RESULTS: Twenty-five (83%) responding ADRCs employed an average 42 (SD=7) retention tactics. In a multivariable model that accounted for participant characteristics, the number of retention tactics used by a center was associated with participant retention (odds ratio=1.68, 95% confidence interval: 1.42, 1.98; P<0.001 for the middle compared with the lowest tertile survey scores; odds ratio=1.59, 95% confidence interval: 1.30, 1.94; P<0.001 for the highest compared with the lowest tertile survey scores) at the first follow-up visit. Participant characteristics such as normal cognition diagnosis, older age, higher education, and Caucasian race were also associated with higher retention. CONCLUSIONS: Retention in clinical research is more likely to be achieved by employing a variety of tactics.

EVALUATE-AD and Tele-STAR: Novel Methodologies for Assessment of Caregiver Burden in a Telehealth Caregiver Intervention - A Case Study.

AIMS: We explored the relationship between objective and subjective measures of burden prior to and after a telehealth-based caregiver intervention. One caregiver participated in two studies, one to assess the feasibility of objective, home-based monitoring (EVALUATE-AD), the second to assess the feasibility of a caregiver education telehealth-based intervention, Tele-STAR. METHODS: Subjective measures of burden and depression in Tele-STAR and objective measures related to daily activities of the caregiver in EVALUATE-AD were compared to examine trends between the different outcome measures. RESULTS: While the caregiver reported an increase in distressing behaviors by her partner, burden levels did not significantly change during or after the Tele-STAR intervention, while objective measures of activity and sleep showed a slight decline. CONCLUSION: Unobtrusive home-based monitoring may provide a novel, objective method to assess the effectiveness of caregiver intervention programs.

Technology and Dementia: The Future is Now.

BACKGROUND: Technology has multiple potential applications to dementia from diagnosis and assessment to care delivery and supporting ageing in place. OBJECTIVES: To summarise key areas of technology development in dementia and identify future directions and implications. METHOD: Members of the US Alzheimer's Association Technology Professional Interest Area involved in delivering the annual pre-conference summarised existing knowledge on current and future technology developments in dementia. RESULTS: The main domains of technology development are as follows: (i) diagnosis, assessment and monitoring, (ii) maintenance of functioning, (iii) leisure and activity, (iv) caregiving and management. CONCLUSIONS: The pace of technology development requires urgent policy, funding and practice change, away from a narrow medical approach, to a holistic model that facilitates future risk reduction and prevention strategies, enables earlier detection and supports implementation at scale for a meaningful and fulfilling life with dementia.

Using Technology to Facilitate Fidelity Assessments: The Tele-STAR Caregiver Intervention.

BACKGROUND: Families living with Alzheimer disease and related dementias have more access to support thanks to the development of effective telehealth-based programs. However, as technological science grows, so does the risk that these technology-based interventions will diverge from foundational protocols, diluting their efficacy. Strategies that ensure programs are delivered as intended, with fidelity to guiding protocols, are needed across the intervention spectrum-from development to wide-scale implementation. Few papers address fidelity in their technology-based work. Here, we present our translated telehealth intervention, Tele-STAR, with our fidelity findings. OBJECTIVE: This study aimed to assess the preliminary efficacy of Tele-STAR on reducing family caregiver burden and depression. Across the implementation phases, we assessed the fidelity of a caregiver education intervention, STAR-C, as it was translated into a telehealth option (Tele-STAR). METHODS: A total of 13 family caregivers consented to participate in an 8-week, videoconference-based intervention (Tele-STAR). Tele-STAR efficacy in reducing the affective burden of caregiving was assessed using pre- and postintervention paired t tests. Content experts assessed program fidelity by reviewing and rating Tele-STAR materials for adherence to the original STAR-C protocol. These experts assessed treatment fidelity by viewing videos of the intervention and rating adherence on a checklist. RESULTS: Tele-STAR reduced caregiver burden and retained good program and treatment fidelity to STAR-C. CONCLUSIONS: We found Tele-STAR reduced caregiver burden and had good fidelity to the original protocol. Assessing fidelity is a complex process that requires incorporation of these procedures early in the research process. The technology used in this study facilitated the accrual of informative data about the fidelity of our translated intervention, Tele-STAR.